OK, some more answers for you fabulously inquisitive folk, but before I do, a quick plug to go to www.savejess.org.uk and buy those tickets if you haven’t done already!
So, back to the questions, some of these were posted on Facebook, in case you’re wondering where the original questions are:
Why do so few transplants happen and what can normal people do to help the success rate?
I wish there was a simple answer. I think it’s a combination of things, one of the biggest being the lack of donors. However there are many other influences including lack of resources and infrastructure, the need for improved donor management (which links back to resources) to ensure that organs are kept in optimal condition during retrieval and transit, and the fact that transplantation is so very very specialised. Transplantation is not yet a “norm” and until it is, these problems will continue to exist. But I do genuinely believe that one day, the UK will see transplant and organ donation as something that is just part of society and of life and death.
You’ve settled into a new house and job and are still into campaigning. What else would you love to do, other than have your own talk show of course? ;-)
To stay here and keep on enjoying every second. That is honestly my greatest wish (other than to be crowned queen of everything, clearly)
You keep your life with Adam private but can you tell us three great things about him, apart from the obvious ones.
His ability to see the bigger picture, his way of knowing without me saying, and the fact he loves me for being me.
I want to know what keep A going through your darkest moments?? Please don't feel you have to answer this I know it's not about you and A is a very private person.
I did actually ask him about this following this question. He said it’s difficult to answer as everyone is so different therefore the way people handle things are going to be so different. A big thing was definitely keeping his own life going, and I firmly believe the fact he kept a sense of “self” throughout was vital, especially if things hadn’t gone the way they did. I don’t know how the partners of PWCF do it really, and after co-writing this with Jac I was left even more in awe. Which is probably daft as I know people say the same thing about CFers and marvel at how they keep going. I’m rabbiting, I shall stop.
Do you find it hard doing all the tx awareness raising? Do you not sometimes just want to fade into the background and forget about it all?
Very interesting question. When I got my transplant, a lot of people gave me advice on the fact I would probably now want to drop all awareness and shed as much of my post-transplant identity as possible, so I was fully prepared to feel that way. In fact, I’d say I almost feel the opposite. I have a bizarre sort of fear that I will one day forget what it was like to be that ill. I don’t want to forget, I want to always remember what it was like to ensure that I never forget how lucky I am to be how I am now. The first time I realized I couldn’t physically remember the feeling of struggling for every breath, I panicked. Of course I remember it all mentally, but the physical feeling of it plays a strong part and my body finds breathing easy now, those feelings of struggling replay to me as if from a film; like watching someone else experiencing them, rather than myself.
I am who I am now because of everything that has happened to me, and I personally feel that it is vital to embrace each and every experience I’ve been through. I am not religious, nor do I believe in fate, but I do believe that my transplant is a gift and that I do have some responsibility to use it to help others get theirs. I don’t even feel this is a moral responsibility, just something I have to do. And want to do, more importantly. Maybe it helps me tackle survivor’s guilt, I don’t know. But I love what I do, and whilst I love it I will keep campaigning. It’s a massive part of my life, of me, and of who I am.
I was wondering if you've done any singing professionally or in a band or anything as you seem to have a good voice?
This one made me smile, because I don’t have a particularly good voice (not fishing for compliments here so don’t comment if you’ve heard me sing!) I am, however, very practiced and love singing harmonies, I’d say that’s where my strengths lie. I much prefer singing as part of a group, but I enjoy passing on knowledge of techniques to others, which is obviously where the teaching comes in. It’s a love and a skill I’ve developed rather than a natural talent, so no, very little performing (other than in choirs and groups).
What's your favourite film? And why?
Very tricky one. It depends what mood I’m in (what a cop-out!) I do love Richard Curtis films as I love his observations on people and society. I am also a big fan of Dogma. But one of my all-time favourites has to be It’s a Wonderful Life; my sister has written about it’s link with our family in her blog post here.
I wanted to ask - how has your transplant has affected those around you, your siblings, parents and your hubby?
That’s a very interesting question too...from my perspective, the main thing it has done is lift a whole lot of worry off their shoulders. When I was ill, a lot of life revolved around me. It couldn’t really be helped as whenever anything was planned, thoughts that would crop up would inevitably include “Will Em be ok? Is she coming with, if so, how, and if not, who’s around to ensure everything’s fine? Can I get back if there’s an emergency/she gets her call?” etc etc. It’s so wonderful now to get a phonecall from a family member telling me excitedly that they’ve just booked a holiday, no secondary thoughts of concern or worry. Life has normalized drastically, that’s the biggest change I see. But for a more accurate answer, I shall have to appeal to any family readers to insert their opinions in the comments section.
Has your transplant affected your relationship with your husband? Since you used to be so poorly and dare I say dependant on him and now you are equals so to speak?
Good question Gem, (congrats again btw) I think we were quite careful to ensure our relationship always remained a relationship. It was very important to me that he never fully became my carer, although, inevitably, a lot of caring was done and I was hugely dependant on him as I was everyone around me. My personal view? We’ve adapted rather well. We can be a normal couple, do normal things and I can participate in everything – yes that means the cleaning and the washing and taking out the bins as well (dammit). Maybe this was helped by the fact I always remained fiercely dependant in mind, if not in body. To the extent that Christmas 2006, just days before my transplant, I sat on the sofa giving cross instructions to my poor mother and husband who attempted to decorate the tree in the way I wanted it done. I think this links back to the other question about relationships and coping; everyone is so very different in the way they handle things, but for me, me staying “me” and him staying “him” was hugely important, both at the time and thinking of what may lie ahead.
Can you pinpoint the exact moment that pink became such a focal point of your life?
It was definitely around the time my health started getting worse. I used to be quite a grungy teenager (honest!) and was very much into black items of clothing and baggy jeans, although I always accessorised with sparkly rainbow coloured stuff, even then. As I got increasingly more dependant on others I found the princess analogy helped me come to terms with it. I think the pink thing tied in with that. Also, you don’t feel particularly girly and feminine when coughing your guts up, it may have been a bit of a counter-attack on my that. Or it may have just been that it’s a girly, cheerful colour. It makes me happy.
Can you still ride a bicycle? I tried and I can't :D
Do you know what, I have no idea. It’s going on my to do list.
Blog?! Vlog?!? Who knows....
5 weeks ago